Dystonia and Me

Patient Leader

I suffer from Early Onset Generalized Dystonia, which has been part of my daily life since 2012. Over the last few years I have also been diagnosed with Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome, Autonomic Dysfunction, Endometriosis, Pain Triggered Non Epileptic Seizures, and Chronic Neurological Lyme Disease. I started my blog Dystonia and Me to help increase awareness of these conditions, to advocate for myself and others, and to show the reality of living life with a chronic condition. My blog has evolved into discussing all of my conditions, how they impact my life. Awareness is key to finding better treatments and in time a cure!


Abingdon, ENG


Best in Show: Facebook Best in Show: Twitter Best Kept Secret Health Activist Hero Best in Show: Blog

Rebecca suffers from dystonia. In her blog she shows an unbeatable optimism which is very inspiring. She remains positive where a lot of people would have given up  — Ingrid

Working to beat Dystonia whilst sharing her experiences and inspiring others with her positive attitude and guts in the face of a debilitating disease.  — Mike

Amazing strength, determination and bravery .  — Rae

Despite suffering herself on a daily basis she writes a truly inspirational, upbeat and positive blog. She helps others, points them in the direction for help, keeps them going. Posts new research, links to ideas for help etc She's met with her local MP, constantly looking for solutions to the problems people with Dystonia face.. A true health activist.  — Sheila

Rebecca's blog is both inspirational and illuminating. Her life has become an expedition into unchartered territory, instead of becoming disorientated she looks at the landscape and explores the new possibilities within it , riding for the disabled, home gym instructor, studying reflexology. She shares new discoveries and possible therapeutic paths with excitement and doesn't allow the lack of knowledge, some medics have, of Dystonia to obstruct her. The honest and revealing way in which she shares symptoms and experiences and how she adapts to them will be a source of encouragement and hope to many people facing life changing illness. Not only with their condition but also in and finding their way through the maze of statutory agencies for support. The bottom line is this young woman is bold, beautiful and incredibly brave.  — Joanne

Rebecca opens her heart and soul to share the day in and day out of life with the neurological movement disorder dystonia, ever espousing a positive point of view. Her writing is poignant, humorous, informative and straight from the heart.

She suffers from dystonia and is trying her utmost to raise awareness of the disease. An incurable disease, she was training to be a midwife when she was struck by the disease, she is extremely brave and will not give in to a severely disabling disease but is trying her utmost to further her education, sets herself targets for things she would like to achieve, attempts disabled horse riding and many other things. Her pain and spasms are so severe at times they render her unconscious, this can happen at any time of day or night no matter where she is. She has to carry a letter to tell medics what to do to help her because many in the medical profession have never heard of it. She runs a blog to describe her daily life and has encouraged other dystonia sufferers through it. To find out more about an extremely beautiful and brave young lady who won't give in visit her blog on http://dystoniaandme.com/. I have met her personally and her bravery brought tears to my eyes.

I have been subscribed to her blog for two years now. Some of Rebecca's symptoms present similarly to my own. Her approach to managing her condition has helped boost my confidence - I've a long way to go but her blog has made such a difference. Thank-you  — Jenny

Dystonia and me is an inspiring documentation of what it is like to live with a little known chronic illness. The blog is honest, informative, tear jerking, heartwarming and brave. The many readers comments show what a help it is to others in a similar situation. It raises important awareness of so many issues faced by so many on a daily basis.  — Sheila

She shares so much information. She offers advice where she can, wise words, kind words. And she writes truly inspirationaly.  — Sheila

Dystonia and Me

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